Lupus, What Is It?

Systemic Lupus
Erythematosus (SLE or lupus) is a chronic autoimmune disease that can
affect any organ in the body and cause inflammation. The inflammation is
a result of the
immune system (which is meant to fight infections and foreign cells),
for reasons not clearly understood, getting incorrectly programmed to
fight their own cells in the body, resulting in organ damage and
dysfunction.

Lupus
can be classified into two main types: Systemic lupus and skin lupus.
Systemic lupus can affect any organ system in the body. On the other
hand, skin lupus, or discoid lupus, mainly affects the skin without
internal organ inflammation. This can present as a rash on the face or
hair loss. Other types of lupus that can be seen are drug-induced lupus,
which is due to certain medication and is resolved when the medicines
are stopped, and neonatal lupus in babies,which is due to the transfer of inflammation and antibodies from the mother’s blood to the baby.

There
are several misconceptions about lupus. Debunking common myths about
lupus is important in understanding the condition, and to help patients
cope with the disease and improve their quality of life. May is Lupus
Awareness Month, so this is the best time to find out some facts about
lupus.

Lupus is contagious: Myth –
You cannot “catch” lupus from someone or “give” lupus to someone. A
person will not contract lupus by simply touching someone with a lupus
rash or through sexual activity. Lupus is not an infection but is a
reprogramming of the immune system to fight their own body.

Lupus is rare: Myth –
The Lupus Foundation of America estimates about 1.5 million Americans
and five million people worldwide have this disease. It is possible that
someone you know may have lupus.

Lupus only affects adult women: Myth –
Lupus can affect people of any age and can affect men, but is most
common in women between the ages of 15 and 45 years. About 15% of
patients with lupus are children, and they tend to have more severe and
difficult to treat disease. Lupus is two to three times more common in
African-American and Hispanic women compared to Caucasians and otherethnicities.

The butterfly rash is the only rash of lupus: Myth –
Lupus rashes take many forms. The butterfly rash on the face is the
characteristic rash, but it may present with a spectrum of other types
of rash as small spots or red circles or blisters or disc-shaped
scarring lesions of the skin on the arms, legs, chest, scalp or back.

Lupus mainly affects the joints and skin but can affect any organ: Fact –
Lupus can affect the skin, muscles and joints, mucosal membranes of
mouth and nose, kidneys, brain, lungs, heart, gastrointestinal tract,
blood counts and bone marrow, and lymph nodes. It can cause dry eyes and
mouth and can cause vague symptoms like unexplained fatigue, fever and
weight loss.

Depression is a common symptom in patients with lupus: Fact –
Depression may be caused by inflammation of lupus affecting the brain
or may be a result of the chronic disabling symptoms. It requires
treatment with a combination of support and group therapy, medications
and psychotherapy. The correlation between depression and lupus is very
significant, and we cannot afford to ignore it.

Having a positive ANA test result means that you have lupus: Myth –
The Anti- Nuclear Antibody (ANA) is a blood test that detects
antibodies produced by the immune system that can fight the own cells.
However, these antibodies can be present in up to 10% of the normal
population without having lupus, or it could be from another cause such
as infection, other autoimmune diseases or cancer. A diagnosis of lupus
is made based on the entire clinical presentation of inflammation in
multiple organs after ruling out other causes and not just a blood test
being positive. The ANA should not be checked without having the
concerning symptoms of lupus.

Lupus is unpredictable: Fact –
No two cases of lupus are alike. Lupus can come on suddenly or develop
gradually over time. It can range from mild to severe and even be
life-threatening. Symptoms can flare up periodically or go into
remission. Lupus can present in many ways depending on which organs it
involves. Lupus is a disease with many faces and is known as the “great
mimicker” since it causes symptoms that could also be due to many other
causes like infections or cancer. This makes diagnosing lupus very
challenging, and most patients go five to six years seeing multiple
physicians before being diagnosed with lupus, thus delaying the
treatment and resulting in permanent organ damage.

Lupus is a terminal disease: Myth –
In most cases, lupus is not fatal if it is caught early and treated
appropriately. The more severe cases of lupus are those with kidney or
brain involvement. The most common causes of death in patients with
lupus are infections (due to the immune system being suppressed by
medications used to treat lupus) and heart disease (due to the
inflammation).

Lupus is curable: Myth –
Lupus does not have a cure as of now, but the appropriate treatment can
drastically improve the quality of life for patients by limiting the
inflammation and organ damage. The fight to cure lupus is ongoing, and
research is being continuously done to get closer to that goal. Perhaps
one day there will be a cure for lupus. Until then, rheumatologists
treat lupus with a combination of medications like nonsteroidal
anti-inflammatory drugs, anti-malarial drugs, corticosteroids like
Prednisone and various immunosuppressants.

Prednisone has many serious side effects: Fact –
Prednisone is the most commonly used medication to treat lupus and
suppress the severe inflammation initially and during severe flares.
Prednisone should be tapered as soon as possible due to a multitude of
severe irreversible side effects such as diabetes, hypertension,
cataracts, central obesity, avascular necrosis, osteoporosis, increased
risk of infections, like shingles, and gastric ulcers. Patients begin
steroid-sparing immunosuppressants that will help keep them in remission
to enable lowering the dose and duration of Prednisone use. The biggest
challenge faced in tapering the Prednisone dose is differentiating a
lupus flare from the ill feeling due to the withdrawal of the
Prednisone. Hence, the taper needs to be done slowly and supervised
closely by the rheumatologist with frequent monitoring.

People with lupus should not exercise: Myth –
Patients with lupus should exercise under the guidance of their
rheumatologist and physical therapist since strengthening the muscles
and improving range of movements of the joints is an essential component
in the treatment of lupus. Exercise also releases hormones called
endorphins, which make the patient feel better and helps deal with
depression.

Patients with lupus cannot work: Myth –
When diagnosed early and treated appropriately, a person with lupus can
lead a normal life as long as they are in remission. Patients are
encouraged to lead a normal and active life while their symptoms are
controlled.

Women who have lupus cannot become pregnant: Myth –
More than half of the women with lupus deliver healthy babies. Some
women, depending on the nature of their disease, can give birth to
babies with a skin rash, low cell counts or heart problems that require
close monitoring by a multidisciplinary team including a high-risk
obstetrician and their rheumatologist. Some medications can cause birth
defects, and it is essential to discuss the risks with your obstetrician
and rheumatologist before planning for pregnancy. Some women can have
frequent miscarriages or preterm delivery because of preeclampsia (high
blood pressure) due to the increased propensity to form blood clots in
the placental vessels, a condition called antiphospholipid syndrome.
Women with active and severe lupus, like inflammation in the kidney or
brain, are advised to avoid becoming pregnant for six months after their
disease is in remission to prevent maternal and fetal risk, including
death.

Lupus patients are never alone: Fact –
Lupus carries a social stigma, and patients often keep their diagnosis a
secret. This is possibly due to the constant suffering from chronic
intangible and unexplainable symptoms like fatigue, pain and depression,
or not wanting sympathy or being ashamed of the scarring rash and
changes in their body. A person dealing with a chronic and disabling
disease like lupus is facing a constant battle with their body and mind
every day to live and function.

There
may be many times when a lupus patient may feel like giving up on this
battle. It is during these times that they need to find their strength
from their family, friends and the community. It is our job as a part of
the health -care community working on lupus awareness to provide “Lupus
Warriors” with a safety net and support system that they can reach out
to in a time of need. In our effort to accomplish this, a support group
is being formed to take place on the first Saturday of every month from
11 a.m. until noon at LSU Health Shreveport starting this June. Email momfightlupus@gmail.com for more information and to register for the support group.

Mamatha
Katikaneni, MD, is an assistant professor in the Center of Excellence
for Arthritis and Rheumatology at LSU Health Shreveport, and codirector
of the Rheumatology Clinic at Ochsner LSU Shreveport Academic Medical
Center. Matthew Malus, MD, is a third-year internal medicine resident at
LSU Health Shreveport.